Watching a loved one change because of dementia is one of the hardest things a family can go through. Jo (McDonnell) Huey is the Owner of the Alzheimer’s Caregiver Institute, a Founding Board Member of the Louisiana Geriatric Society and the Angel Alzheimer’s Daycare Center, and Past President of the New Orleans Association of Health Care Communicators. With decades of experience training family and professional caregivers, she believes understanding the disease process is the foundation of compassionate, sustainable care.
Jo believes that with the right training, support, and shifted expectations, caregivers can move from frustration to connection.
Keep reading to learn what she has to say.
The biggest challenge caregivers of persons with Alzheimer’s and related disorders face is self-care. Statistically, up to 32% of the primary caregivers die before the person for whom they are providing care. There are many seemingly legitimate reasons for the caregiver not taking care of their own physical and mental health. Care, often referred to as the 36-hour day, requires time, energy, and costly resources. Assistance is difficult to find, creates guilt, and is rarely seen as acceptable by the person suffering from these symptoms.
The misconception about people with Alzheimer’s and related disorders is that the person is gone. The role the person once fulfilled may no longer be visible; however, there is a real person there. This person’s feelings are heightened; they are quicker to anger, tears, expressions of love, and caring than they might ever have been. They desperately need love, understanding, and attention. It is important to accept their disabilities as a part of the disease process. Concentrate on their abilities, and there are many. It will improve the quality of life for everyone involved.
The most important step is training to truly understand the disease process and how it is manifested in each individual. Training even for family members, along with grief counseling for the loss of the role the person held in the caregiver’s life, is essential. Facilities and communities need to focus on excessive and continuous training more than on staffing numbers. Untrained caregivers create challenges in care and excessive staff turnover. Training and understanding the disease manifestations is the most important solution and the one that is rarely sought!
You don’t have to have it all figured out on day one — and honestly, nobody does. Caregiving is something you learn as you go, one day at a time. Get educated early, and don’t wait until you’re drowning to ask for help. Perfection was never the goal, so let that go. The biggest shift for me was learning to meet my loved one where they were, instead of constantly trying to pull them back to who they used to be. Once you adjust your expectations, lead with compassion, and actually take care of yourself along the way, everything gets a little easier — for you and for them. Those small moments of real connection matter so much more than trying to fix or control the disease.
As Jo shared, dementia caregiving is a journey that demands both compassion and skill. The most important things to remember:
Dementia care is not something families figure out overnight. But with the right training, realistic expectations, and self-compassion, they can walk the journey one step at a time and never have to do it alone.
Jo is the Founder and President of the Alzheimer's Caregiver Institute, a founding board member of the Louisiana Geriatric Society and the Angel Alzheimer's Daycare Center, Past President of the New Orleans Association of Health Care Communicators, and Past Chair of the Board of Directors of the Louisiana Assisted Living Association. She holds a Master's of Social Science from the University of Colorado, where her thesis was "Effectiveness of Training for Alzheimer's Caregivers," and is the author of Alzheimer's Disease: Help and Hope and Don't Leave Momma Home with the Dog, along with numerous self-paced training programs for family and direct caregivers. A world-renowned specialist in helping family caregivers navigate the emotions and skills needed to support a person with Alzheimer's disease, she brings fresh, practical insight and her own brand of humor to help people turn disaster into delight, hopelessness into happiness, and frustration into freedom.
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